All about Xeloda
Comments
-
I have decided the rash on my face is definitely Xeloda related. I am on day5 of myboff week and my face is tremendously better. I am going on a Xeloda break in a week fir vacation so I am hoping it will clear up. Thanks everyon
0 -
Nel, X sort of does that to me. If I have too much going on, I have laid awake with my mind feeling like fireworks going off -- thoughts shooting in all directions and impossible to calm them down. It's only happened a couple of times, and both times I was juggling way too much and simply could not quiet my mind. Two things have helped me -- a Mindful Meditation class, so I can go back and use those techniques at night to relax my body and mind. I've also been getting weekly B12 shots, which have helped me sleep through the night again.
0 -
I was wondering if any of you have developed severe leg cramps on xeloda. I have been on xeloda for 4 years, but in the last few weeks, I have been having severe leg cramps, mostly at night. I am leaving on a cruise tomorrow and hate to be in pain.
I also have neuropathy from perjeta.
Have any of you found anything to help lessen leg cramp pain.
Thanks
0 -
I was wondering if any of you have developed severe leg cramps on xeloda. I have been on xeloda for 4 years, but in the last few weeks, I have been having severe leg cramps, mostly at night. I am leaving on a cruise tomorrow and hate to be in pain.
I also have neuropathy from perjeta.
Have any of you found anything to help lessen leg cramp pain.
Thanks
0 -
So 3-16, when your onc said X was working on sun damage, did she/he mean it was treating pre-cancerous skin spots?
Nel, I once witnessed someone experiencing the beginnings of serotonin sydrome, and manic behavior was part of it. It would be interesting to ask a really good pharmacist and/or psychiatrist about possible, even if rare, interactions of Xeloda or your other meds/supplements with your anti-depressant and anti-anxiety meds.
Hi, Renee. I have mostly heard of leg cramps with anti-estrogens. Are you getting the right amount of salt and potassium? You might ask your onc if it would be safe for you to drink tonic water, which has a small amount of quinine in it. My onc mentioned it in relation to foot cramps I had on Faslodex. Do get your doc's ok if you want to try it.
0 -
Renee, I agree with Shetland. Are you getting enough potassium? Potatoes hsve potassium, as do raisins and prunes, so you don't have to get sick of eating bananas.
0 -
Renee, not only potassium, but magnesium as well. And dehydration can also add to the imbalance. Be sure you're drinking enough water and then add mineral rich foods, as Shetland and Lita suggested. I use a magnesium supplement that seems to help.
Also, Shetland, interesting and probably a keen observation about Nel's question. Definitely a question that should be asked!
And just a quick comment about X and sun damage. I have a darker area about the size of a silver dollar on my right forearm that literally turned purple during my first 2 or 3 cycles of X. It was so weird. Now it seems to have calmed down, but X absolutely changed it's color. I also had a quarter size red scaly area that would improve with various creams and RX's, but never entirely went away. Since X, it's totally gone. Not sure if a rash is related to sun damage, but X has noticeably affected those two sun damaged areas for me.
0 -
Thanks for the replies about my leg cramps. Going to take theadvice you all have given me. Thanks so much.
0 -
Thank you for the info about X and my mood or whatever it is? See onc tthis week and will be asking
0 -
I got my CA 27.29 results. Xeloda is working! I've had about a 100-point drop after just two cycles. Next month it may be in normal range. (My TMs have proven to be very accurate.) My onc is "cautiously optimistic" that I could continue to have a good response to X for years.
Dlb, how do you interpret the X effects on your sun-damaged skin? Extra sensitive and more damage? Treating pre-cancerous lesions? Something else?
And Nel, if you have only recently started the anti-depressant, ask the doc if he/she thinks you could be hyper-sensitive to it. They can do a cheek swab test to see what genetic polymorphisms you might have that would affect the enzymes that metabolize these drugs.
0 -
Goldie, I saw a few pages back that you asked about Ibrance and how long it worked for some of us. It never worked for me. I had progression on Ibrance and in fact landed me in the hospital with a blood infection twice. So I can't help you there. If X does stop working for you, I hope Ibrance helps.
Others have mentioned eye and light sensitivity- yes, gosh! There are days it feels like my eyes have been under a tanning bed all day, they're so sore and red, not to mention when I wake in the morning I have to peel my lids open - they get so stuck together from excess tears. My nose seems to run all day too. I haven't seen this mentioned but I have to believe they're related.
I can no longer eat beef. I get terrible stomach pain, vomiting and diarrhea all at the same time. I've learned it the hard way, three times, so it's not just a fluke.
That's okay - I'm finding other ways to get protein, even with a diminished appetite. I hope X continues to provide quality lives to you all.
Amy
0 -
I know that x lowers blood reassure. But, does it raise your pulse?
0 -
Amy, yes, my eyes are the same way. Stuck together like glue when I wake up each morning, very sensitive to light, and my nose runs. Have you tried ground organic bison? A guy in one of my support groups said ground meat is easier for the stomach to handle. ( Bison is expensive, but it tastes the way hamburger used to taste when I was a kid in the 60s.)
Kaption, I don't know about the sped up heart rhythm, I take atenolol for my cardiac arrhythmia- I have tachycardia, which is a sped up heart beat.
0 -
Kaption, I forgot to mention that atenolol lowers bp too. I'm gonna have to cut my pills in half because I'm getting a little too light headed. At my last dr appt, my bp was 106/63, which is unusual because just about everybody's bp goes up at the dr's office, and this was my off-cycle week, so I bet my bp is probably even LOWER on my on-cycle weeks, as evidenced by this evening and one day a couple of weeks ago. When I got up out of the chair, I almost passed out. I even saw stars. Nowadays, they actually want your resting bp to be 110/70, and even tho mine wasn't that much lower than normal, it WAS my off week. I suppose I could get one of those bp cuffs and check mine during my on weeks to test the theory.
I've lost some weight since my dx, too. I know that they dose your hypertension drugs by weight, height, etc. I've shrunk 2 inches as well. I'm going to get the GP's approval b4 I do anything to be safe.
0 -
Kaption, i couldn't sleep, so I did some online research.
www.netdoctor.co.uk says that Xeloda definitely can cause heart palpitations and speeded up heart beats (also skipped or missed beats) in 10% of the people who take it. I had all these b4 I even started X, so I better stick with my atenolol, but maybe titrate it down a bit for my decreased bp.
And yes, it said X can both raise and/or lower bp in certain individuals.
Fatigue and dizziness were listed as MAJOR se's for more than 10% of population who take it as well.
If one is over 60, one is more susceptible to all of these se's.
So there we have it.
0 -
Thank you Lita. Atenolol is what I take too. I've reduced my usual dosage by 3/4. For years I took one 25mg a day. While on Ibrance my bp went up so we increased it to 2 a day. I'm now on 1/2 a day. BP runs between 120/80 (ideal) then can drop to 96/62. Pulse used to be a nearly always 70. Now it's 85+ and often near 100 for no reason. Mild palpitations. Seeing an cardiologist today. I will definitely share the research with her. I just cannot figure out how my bp goes to normal but my pulse is going crazy. I can't go off x for this- can I?
Also see my oncologist today. Had PET Monday. Results were not as wonderful as last time. (Started x the first of Feb). "Overall worsening disease" in bone
Brain lesion is a whole other topic.
Thank s so much for the info Lita.
0 -
Amy, yes on the nose as well. I have to wear old lady sun glasses, that wrap around the sides! Even if it's cloudy out. As for the Ibrance, I wasn't sure how good it was, as my onc seems to be anxious for me to try it, that he has ONE patient that is doing quite well on it. Faslodex didn't do me any good either.
0 -
Keeping you in prayer, Kaption.
Yes, I cut my pill in half today. I have those nasty ectopic, or missed beats, late at night and sometimes multiple beats, too, like boop boop ba bi bi ba boop. Scares the crap out of me.
Cardiologist says it's not bad enough yet for a pacemaker, and sadly I probably won't be around long enough to get one, unless the next line of IV Tx really messes with the rhythm. He thinks atenolol should still be able to handle it.
0 -
Just returned from the MO and then cardiologist. Slight progression on my PET scan Monday. If the TM is higher, we are likely to switch treatments. More to come on that.
Cardiologist was happy with the Echocardiogram results and my record keeping of pulse and bp. Since I am now going to get an extra week off x (while MO makes a new plan), we're going to stay on the 1/2 atenolol a day. The bp is good and high but acceptable.pulse is accceptable. After treatment change, we'll meet again to see what it's doing to me as far as fatigue,bp, and pulse. Love my new cardiologist. Good listener and very patient!!
0 -
Shetland, awesome about the PET scan results!
Kaption, good luck, we want something that works well for you!
I knew about the eye issues, and I too have to peel my eyes open in the am. Sitting here now, they are burning, stinging and watering.
Did not know about the heart stuff, thanks for talking about it! I too have Tachardia, it beats too fast, sometimes too slow, skipped and missed beats, so I've been on Atenolol for years, and it definitely helped. Then a few months before my mets dx, it started to get really bad, worse than ever before, and I was getting pain too, scared the shit out of me too! They had me do the 24hr Holter monitor. Dr. switched me from Atenolol to Metoprolol, 1/2 pill in am and pm, it helped. And then it started acting up again, now that I think about, right when I started X, hmmm.
I see my MO tomorrow, and will ask to switch to 7/7 schedule, and hope it will help with the HFS and fatigue.
Also, my blood counts were all over the place. Some have been consistently rising, and now off the chart. While others doing the opposite, off the chart on the low side now. So much of what I've read about the different types of counts, much of it keeps mentioning bone marrow issues. This is freaking me out. Add to that, I have mets thru my lymph node system, which can tie into the bone marrow. Also, my Spleen lit up on PET, with high SUV. BC to Spleen is rare. But the Spleen is also part of the Lymph system, so I'm wondering if this all ties together? It makes sense, or maybe not?!
And, the bloodwork counts that involve the liver are still going up, off the chart now, and AST doubled since three weeks ago. Not worried about mets to liver, they're worried about liver damage. I had some of this prior to mets dx, and now it's worse. If I were a liver, I know I wouldn't like X!
TM's rose too, both the CA15-3 and CEA. It was only the second time they were checked, and I did two cycles of X in between. I know this may mean nothing, and that they can rise before settling down, but it's not what you want to see!
0 -
Kaption, hoping they find something that works for you. Keeping you in my prayers. Sounds like you are going through a lot right now. Keep plugging along and keep up the fight.
Hugs to you,
Anita
0 -
Well, I've seen the scan results and TMs. Saw my MO yesterday. Looks like I'm leaving Xeloda already and moving to Abraxane.
It's sort of a change in philosophy for her. She doesn't want to squeeze out non-productive extra months from X. And she wants to hit it hard with the next chemo. She is looking at a combo trial, but my brain met may eliminate me again.
Anyway, thanks to all you wise, supportive women and men. May you get lots of healthy years from Xeloda.
0 -
Kaption, good luck!
From what I can read from your bio, Abraxane looks like it might be your third line of attack since becoming metastatic?
Aromatase inhibitors first, then Xeloda, then IV chemo, is pretty much standard of care these days. You have many, many lines of Tx left if Abraxane doesn't do the job.
0 -
Lita,
You're close. I wasn't sure how to update. I took tamoxifen between my 2 bc episodes. After mbc I took taxotere and herceptin and perjetta ( was HER2+), then Ibrance and Letrozole, a quick run with Fasldex, then Xeloda. Always starting over,
0 -
Kaption, I hope Abraxane does the job!
0 -
Kaption! Please come join me and Artist on Abraxane. We are going big, before we start Xeloda. You already had a good X experience, so rooting for all of us on our new med journey. I will start in August after I return from Paris.
0 -
lalady,
I saw you on the abraxane board and planned to say hi soon.
Xeloda didn't last as long as I'd hoped. Let's hope abraxane gives me that jump start I need. See you on the other board!
0 -
Shetland, I have been on the same meds for several years so don't think it is that
Met with NP on Wednesday and discussed lowering dosage and she talked with onc. He does not want to do until first PET I was going to wait until the end of Sept as I have a trip planned with my daughter to Spain at the beginning of the month. Have decided to have scan in August and if X is working he may be willing to lower the dosage Agitation and insomnia both are se's of X although not frequent Bringing my go to medical person (cousin) with me for apt following scans
So we will see!!!!
Hope all have a se free weekend and grab the gusto while we can
Nel
0 -
Kaption, there is a time for the big guns. I hope Abraxane will be easy on you. (I had the same drug, paclitaxel, with Taxol and found it very doable and effective.) I'm glad you have a good cardiologist on your team.
Thanks, Mimi. Actually it was not a scan but a very good drop in TMs. (They are accurate for me.) It sounds like now is the time for your onc to be very on top of things and figure out what is going on. Are you at a good place?
Nel, I think it will be good to figure things out before your trip. Then just go and have una vacacion fabulosa.
As far as the eye discussion, every treatment I've had except Tamoxifen has necessitated eye drops. Taxol and Ibrance were the worst.
Have any of you noticed a propensity to clench your teeth on Xeloda? Yes, it could be from tension or stress, but I don't remember ever having to constantly tell myself to stop doing that, even though stress comes with the territory.
0 -
Question for all - is there an endgame to Xeloda? Obviously if it fails to stop progression but I'm wondering if anyone has had such good results, they just stop.
I've been in remission since March and am struggling with the annoying side-effects of X and would love to just stop. Will of course consult with my oncologist first but wonder what other's say or have had experience with this.
Thanks
Amy
0
